Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The latest -- really, REALLY exciting!

No, it's not the marrow, at least I don't think so, but I'll know more about that on Tuesday. But this is good -- very exciting!

Just came back from Albuquerque -- had an appointment there with my new "roadback.org" rheumy. At the very first appointment, he ran tests for everything imagineable. Yesterday was my second appointment, for the results.

Two raging pneumoniaes (very high titres), which he says he can kill with 18-24 months of antibiotics. However, the one thing I need is marrow so I can survive the antibiotics. So he called a buddy at the hospital, and half hour later I was on the table having another bone marrow biopsy. Grrrr . . . And of course they do the biopsy on the back of the pelvic bone, about an inch from the SI joint, so that just makes it extra-special! My SI's are already glowing on the nuclear bone scan, so let's hammer off some bone and suck out some marrow! So, I'll have the results of that by Tuesday. If there's zero improvement, I can't have the antibiotics. I'm just hoping that since I've been away from the methotrexate and sulfasalazine for almost 5 months, maybe there'll be some improvement? Last biopsy was December 12th. (Acquired aplastic anemia, the disease I got from the drugs (most likely), can't be cured, but can go into remission. I'm just hoping that mine will be a bit better. Blood labs aren't great, but you never know. And if it isn't better yet, then bone marrow biopsies every few months to watch it. Lovely, huh? Any volunteers to have a couple of those for me?)

But I am SO psyched to finally have answers! For the past 2 years, I've said that everytime I take antibiotics for something unrelated, most my joint pain disappeared. No one would listen. Old rheumy just wanted to use his toxic drugs which killed most of my marrow. I've told him so many times about the swollen neck glands, also underneath the arms, pain in shoulders gets bad at that point, chest also has swollen lymphs. Even the nuclear bone scan said reactive arthritis (SI asymmetry, etc). Old rheumy just wouldn't listen. So you can guess that he will get hand-delievered copy (by me!) of new test results and dx.

Oh yeah, klebs galore, too. At least I don't need marrow to do NSD! And I guess that's forever? Not real clear on that . . .

Hugs to all,

Patty





We all need 3 things: Someone to love, something to do, & something to hope for.

That's wonderful! it's so frustrating when a doc doesn't listen and you know you were right the whole time. I hope something ends up working for you!!!


*Rox throws you some circus peanuts to tide you over!!!!*

Rox
SURIYAH!!!


Images courtesy of http://www.tekkenzaibatsu.com
http://www.geocities.com/artisan1998.geo/index.html

Are circus peanuts those orange spongy things? Ick! Or real peanuts? (Starch! Double ick!)

I post this to hopefully help someone else never take no for an answer -- those who are waiting for dx or misdiagnosed should keep after it, get a new doc, etc. It's worth it in the end. (But how lousy to have the diagnosis and maybe not get treated! Here's hoping that the marrow will come up and I can have the "cure!")

Thanks, Rox,

Patty



We all need 3 things: Someone to love, something to do, & something to hope for.

Hey there PattY!

Great news!! I hope that your biopsy shows some improvement and you can move forward!! You know Monica and I are with ya all the way!

hugs!!

Bob & Monica

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Patty,

One of the biggest tragedies of health care is the insensitivity of some providers. There's nothing more frustrating than not being heard. I'm glad you're finally getting answers. My prayers are with you for remission of the AA, antibiotic trreatment, and continued improved health!!

LindaG

Patty,

That is fantastic news! Jumping up and down exciting news! I sure hope your marrow smartens up and lets you proceed.

How did you find a roadback.org rheumy? I think I want a rheumy like that .

Big ole hug for you.
Stephanie

Hi Stephanie,

Go to: http://www.roadback.org/index.shtml

There's lots of info on the site -- studies and research, listings of doctors (state by state), and the basic idea of the approach. I wish you luck!

Hugs,

Patty



We all need 3 things: Someone to love, something to do, & something to hope for.

Thanks Bob and Monica -- I feel like I'm almost there . . .

Hugs,

PattY



We all need 3 things: Someone to love, something to do, & something to hope for.

And you keep up the good work with NSD!

Patty



We all need 3 things: Someone to love, something to do, & something to hope for.

Hi Patty,

That is good to hear. I am praying for improvement and that you are able to take the antibiotics if that is what is needed.

It is good to have a rheumy that seems to help....

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb